Dr said it's time for Mom to be in a home...now.
It's been a couple of weeks since I posted anything significant. I've been trying to digest what mom's Dr advised me to do.
We had an event about three weeks when we went to a shopping mall we had never been at before.
It was an inside outlet mall that is really large and we were looking for some shoes for me as I had to go work at a trade show in Vegas and needed some good shoes.
So my husband and 3 almost 4 year old were there and we turned our attention for just a minute and she was gone! (my mom)
My husband went one way and I went the other ... and an hour later we found her.
She was very anxious and while she said...oh no I'm fine, she was wringing her hands and had a wild look in her eyes...it scared her pretty bad....and us too.
So this set her off into a world of anxiety and nervous energy, she was wired and couldn't stay still...she kept going out the front door, walking down the block and and then coming in, begging us to take her out, then walking out the back door to the deck...then walking back in...begging us to take her somewhere, then walking out the front door...over and over and over again.
One of the main issues is that it is very hot out and she was overheating, but she can't feel it...so we are forced to make her stay in for a time and she would get really angry...on the verge of being violent.
I called her Neurologist and got her in the next morning, which was amazing because usually it takes a few days to get her in.
During the appointment he always asks her how she is doing etc...of course she always answers that nothing is wrong and she feels fine...her brain no longer connects the dots and she really does not understand that anything is wrong at this point.
Then he asks me what is going on while she is still in the room...which I've come to understand and frankly she forgets we even went to the Dr within a short time, so anything I say is momentary in her memory.
I told him what was happening and our concerns about her health and we are really concerned about heat stroke and her getting lost or something of that nature.
Also that we were concerned about her aggression, especially with the kids.
During the conversation my mom sat there glaring at me and saying she didn't like being treated like she wasn't in the room...of course we were not, and I was making eye contact with her and including her in the conversation but she was mad.
She even gave me the finger at one point! LOL I'm laughing because it is just so odd dealing with the dementia. (My mom has Early Onset Alzheimer's and Front Lobe dementia at the same time.)
After he prescription to try for the anxiety I asked to speak to him privately.
The reason I asked was because I've had an idea to form a support group specifically for adult children caring for their childhood abusive parent with dementia. So I wanted to know if there were any studies done or being done around this situation and or if he knew anyone that was doing this very thing.
He said that I could join the Alzheimer's support groups, so I had to explain in more detail that the issue with the Alzheimer's association groups as I'd spoken at length with several support people and one that was a top councilor that puts together groups etc have not run across these issue that they were aware of in the groups.
The issues being that as caregivers we have a unique issue with our parents, especially that the old behaviors our parents had are increased and it does not seem to matter how much healing we've done in the past, their presence in our lives tents to reopen old wounds and plays havoc on our emotional and mental well being in a way that isn't the same as someone that is caring for a parent that was loving prier.
Once I explained in more detail that I wanted to start a group to support those of us experiencing this unique situation he gave me some great suggestions...but then he started asking questions about whether or not I'd considered a nursing home.
I told him that I've been given the run around for the past 6 months from Medicaid and only have managed to get her basic medicaid and that I keep getting sent here, or there and it will be 3 month, or longer to get her in etc etc etc.
He told me it was time for her to be in a home not just for her own sake but for me and my family...he was very firm about this.
Then he told me that I should take her down to the emergency room and tell them that I can't care for her any longer and walk away...then they will get her into a home right away.
It shocked me...and I was like...what? I knew I could call the police and do this if she got completely out of control, but the emergency room I didn't know about.
Argh...I've run out of space will have to continue in another post...I'm writing a book here...but I want to be as detailed as possible.
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He looked at me (the Dr) and said I was doing a fantastic job, but I had to consider what it was doing to me and my family and that if they are not responding at social services (I know they call it something else now...like human services or something) that it is the only course of action and that my mom is ready to go into a home.
He also said she would be fine and adjust very quickly and in fact would be better off...which I agree...I know it would be better for her all the way around...she does not like living with me much.
He saw that I was having a real emotional reaction to doing this, so suggested that I call my worker up and threaten to do it...and get really firm with them about the situation and that would kick them into gear as well.
So for the past three weeks I've been sitting with this information...and it has caused me a whole bunch of emotional heartache...and I couldn't figure out why until last night when I was practicing what I would say to them to get them to come out and do the assessment and get her into a home.
Then it hit me.
Taking my mom to the emergency room and walking away would be the ultimate in abandonment from my point of view. While as my husband points out that taking to the home would be really the same thing...it actually is different in that I'd be taking her to her new home.
For those that have not read some of my previous posts...my mom is a sociopath narcissistic personality and was my child hood abuser.
I love my mom...very much and don't want to abuse her because of her treatment of me...what is the biggest thing though is her abandonment of my brother and I ...leaving us on our own most of our childhood to fend for ourselves. She kicked me out of the house right after my 15th birthday and would not speak to me for 2 years after that and this effected me greatly over the years.
To take my mom to the emergency room and just dropping her off and walking away would be me doing this to her...and just the idea is traumatizing to me...I just don't think I could do it unless she really got aggressive.
But...I feel I am forced to use this potential option as a threat in order to get things on the roll...but even threatening it is so outside my personality...yet I'm left with truly no other options.
I think it speaks volumes and I really need to pay attention when one of the nations top Neurologist says it's time and i need to get her in a home now.
He also told me that as far as the group goes that he really liked the idea and that I should not do it until after mom is in a home and I get a break so I can think clearer about it.
I agree on that point...although I have to admit I'm kinda excited about doing something positive to help not just myself but others in similar situations.
...There now I got that out. :) Thank you all for your support and I hope that in some way sharing this may help others cope.
It sounds though Ike you have tried to negotiate Medicaid on your own. You may not have to to the ER granny dumping thing if you can get a good social worker to help you. If the neurologist does not know how to access one for you, maybe contact the Area Agency on Aging, see if there is a geriatric eval service who has somebody, even consider an eldercare attorney office or less expensively, an assisted living locator who can help. The devil is in the details with finances and eligibity requirements and all. You really do need to do something, but if you don't feel right about doing it via the ER, a very short time of trying to go through channels may help you feel best about the whole thing in the long run. And if you need to take her to the ER after all, you could do that and not just leave but be firm about being unable to a for her due to the wandering and bring up any observations of truly psychotic behavior you are seeing, or a geropsychiatric facility that will take a direct admission.
This should be easier, it isn't though, and my heart goes out to you.
My mother is in geriatric psychiatric hospital now awaiting placement in a facility with a mental health mandate. She became too mentally ill to stay in her ALF. I had some painful feelings about cooperating with the psychiatrists in bringing this about, but knew it was the best option. I would never take her into my home as she would ruin my life and health from the stress. She has Borderline Personality Disorder and narcissism (all her life) and in recent years has developed vascular dementia and paranoia, which have made her life unmanageable.
I understand the difficulty of making these decisions for your parent. It does open old emotional wounds and only those who have experienced it understand. I think you are very wise to consider a different group from the regular Alz group.
Dropping your mum off at the ER, or whatever you have to do to get her into a home is not abuse nor abandonment. It is a means to getting your mum the care that she needs, while protecting yourself and your family. My view is that your should act on the advice of the neurologist and do it quickly. I agree with your husband and think that your own feelings of abandonment from being kicked out when you were young are being triggered by this. You have a very young child who will be affected by your mother's illness. If nothing else, and there is more, you owe it to your child to provide them a safe secure environment. You cannot do that with your mother in your home.
shaking - you are fortunate indeed if your mother's behaviour is changing. I think that is rare, and hope it continues for both your sakes. My mother, I believe is not capable of changing due to her illnesses. Shannon's mother has Alz and frontal lobe dementia which affects the control of behaviour and emotions. Those are two serious conditions. I doubt her mum is capable of making much change for long, if at all. I notice from your profile your mum does not have any such condition, which may explain why she has been able to make changes. Good luck to you both
Shannon, come back and let us know what is happening. I really believe that the neurologist knows what he is talking about. ((((((hugs)))) Do something good for you today.
Shaking...yes you are very fortunate that she was able to check herself in...I wish my mom knew something was wrong or should I say that she would have gone to the Dr as we had suggested when we first saw the signs...back then she would have done the same.
In fact...I'm grateful that about 7 years ago...right before this started or right at the start of her dementia's she made me swear that I would never take her in and care for her should she ever have anything like this happen...she wanted to go to a nursing home even if it was kicking and screaming.
That being said...now she is terrified we will put her into a home and of course she does not remember that she had the conversation not just with myself but my brother.
I'm glad now that she told me that because I actually don't have any guilt surrounding actually placing her in a home...where the issues lie are more in the fact that she is going to be very angry with me for a while and the idea of the emergency room it's the abandonment trigger in me.
I can be objective and I understand that the emotions I'm having are based on the past, but man they are so deep and so hurtful that I'm not always able to override them...sigh.
At any rate...mom does not think rationally at all...as an example she has become incontinent at night mostly, so we have to insist she change her depends in the morning and if they leaked at night and she slept in it I make her take a bath and she simply does not understand why I think she needs one or that there is anything wrong with wearing her depends for the rest of the day leaking all over.
She often tells me that she is shocked at how horribly I turned out and how I've been misled in my understanding of the situation and so controlling. This of course is her dementia...but it gives you an idea about how she thinks now...there is no rational thought as we know it...she does not remember that it's important to be clean or brush our teeth or wash our hands and face and that it's perfectly fine not to wash our cloths or bedding after having an accident. (she can not smell any longer so she does not smell it either).
Sharyn...you are right of course...but I think my trama trigger is stronger at the moment then my objective mind...so I will avoid this situation if possible. I'm just glad that I figured out what I was having a reaction too...maybe it will help me deal with it better.
Also, no I would not abandon her in this manner...care giving continues, if only part time when she goes to a home...I think I might actually find some joy in it when I've had a good rest.
Emjo...thank you thank you...you spoke to my heart and I feel now more then ever that my idea to work with others like me in my area is a good idea.
Coming here I have found so many people like myself dealing with similar situations and having trouble finding advise that is appropriate.
It is hard to explain to someone that reading some of the articles surrounding Alzheimer's care, and knowing it does not work for our parents, or even being able to relate to the idea of a loving parent prier to dementia is almost like putting salt on a wound.
Not that I don't understand that the majority of folks are in that situation rather then our situation, and I'm very very grateful for how much information is out there...my experience is different though and discovering there are quite a few that have this issue as well has been helpful.
But also it has made me aware that we need to help one another out, not just here but in person and so the group would work well to help...and maybe more later on, once my emotions are not being tampered with 24/7 ...maybe we can do some workshops or something...I don't know...but I feel it will work out just perfectly as it's meant to when it does happen.
This disease is so horrible, in fact having lost my father to cancer and being at his bedside for two months prier and having been with my best friend when her father died of cancer as well as a dear friend who also did...I can honestly say that now it feels like a cake walk going through that compared to this...and it was super horrible doing the caregiving for my father when he was there.
I will be calling on Monday to speak with SS. I will be firm and unbending in my resolve...mom needs to be in a home...and she does.
(((((((((((Hugs))))))))))))) all the way around!!
Thanks ba...I know that it's true what you say in my mind, it's my emotions I have to try and convince.
I think I've tried to be so not like my mom all these years that it might be something that is ingrained in me not to do...I don't know...figuring it out...:).
I am so glad you are going to get a social worker in to help you work through what is available for your mother. It might be that, if phrased correctly, she will get on board with the idea of moving to a facility. She might not remember day to day, but even partial cooperation would be wonderful.
As others said, you are not abandoning your mother as she abandoned you. You are making sure that she is receiving the best treatment available. With Alz and frontotemporal degeneration it will become worse, so protecting your family while helping your mother is ideal. What I hope is that it goes smoothly. When you are going through the steps, just keep reminding yourself that you are doing the right thing for everyone involved. Big hugs to you.
"We tolerate behaviors that most can't because we learned how to tolerate them. I don't know if that is a good or bad thing -- maybe a little of both. "
Well said and it's exactly right. I do think we have coping skills that most do not, so it can be really bad and we deal with it, while others could not.
It is a double edged sword of sorts, these skills can be good, but then I think it becomes more difficult for us to really own that what is happening is over the line.
The Dr nailed me to the wall on this when I was speaking to him...that I have a difficult time saying..."I need help" ...and I almost always try to help others ... and it helps me but, I have a really hard time accepting that I need the help...hmmm I don't know if that made sense.
Anyhow...thank you for your response.
It's been a busy couple of weeks, had to go out of town for trade show for work, then three birthdays including mine and fathers day.
My husband and I decided to wait till today to call in and see if we can get a rush assessment.
So I did this morning call the Access point for our area and explained that I've been working on getting mom into a nursing home for over 6 months and the best I've been able to get is regular medicaid ... told them I'd called them and gave them all the information over 3 months ago and called back and did what they advised etc etc etc...but bottom line mom's Neurologist told me to take her into an emergency room and drop her off three weeks ago..and I don't want to do this...but it is urgent she get into a home within the next couple of weeks.
I explained what was going on and how it has gotten to a point where we can not handle the situation appropriately and mom is getting so much worse and we are dealing with potential violence and that I didn't think we should have to wait till that happened before something got done and I was through waiting...it had to happen now.
:) so ... a case worker will be out within 10 days to do the assessment and they will get her into a home asap... :).
I was very clear that the Dr said she should be in three weeks ago and I had put it off...but if something didn't get done I had no choice but to do the emergency room route and I absolutely did not want to do it..but for her and our safety I would if necessary.
Sigh of relief .. they took me seriously and something is going to be done finally!!
I'll let you know how it goes...I'm really hoping that nothing bad happens in the mean time...fingers crossed it will go well.
I've never had a bad situation with a social worker before in this State, but you really have to push to get anything done.
I really really really appreciate all the support...it has helped me deal with this in a positive light. Thank You...Thank You...Thank You!! (((Hugs)))
I am in Denver too, get her over to one of the hospital ER's I would not put it off any longer. Do not give them your phone number, they will guilt you into picking her up!
We have a Catholic Hospital close by that I've taken mom too a couple of times due to stroke scares...she never did have a stroke but rather it was the dementia that was causing the issues but they have her files and her latest CAT scan so she is already flagged there.
Also her Neurologist works out of the Colorado University Hospital and I can take her there with out a problem...they have all her files and direct contact with the Dr.
Glad...I am glad you are here btw.
I hear you loud and clear and I know I am walking a tight rope with this...I'm doing the best I can to make this as un traumatically as possible for mom...but also for myself.
If I need to I have myself convinced that I will take her into the ER...but I have to go the route of SS for my own sanity and that of my family in order to say I did everything possible ... so this is what I'm doing.
It all hurts my heart so much...that we are here in this situation...no matter how horrible my mom was or is at times...I can't hate her...I do love her.
I recognize that she suffered from a mental illness in her life...and while I've never been able to forgive her for everything...much of it I at least understand...and as heartbreaking as it is for me...I have a certain amount of compassion for her.
Mostly I am finding compassion for myself and being able to love me and my life and my family, and it is in this place that I find myself...doing my best to be careful and do as much as I can to limit the trauma.
I have taken the last three weeks to come to terms with the possibility of taking her to the Emergency room...so I will if it becomes necessary and the case worker has not been able to do something in a timely fashion...like in the next week.
This could easily back fire on me and I know this...like I say it's an emotional tight rope act.
Just saw something in the news that Hickenlooper signed a bill to get more mental health facilities up and running in the state.
My brother would have had her in a home a year and 1/2 ago...my husband has no problem with it either...it's me.
My moms sister is actually the only one in the family that will freak about it...but I don't care...she absolutely can't handle the situation and has been no help at all.
Everybody else is just fine with it. Sigh...I've had an emotional day with it...I think I've been holding my self so tightly this past year and half that now I'm just starting to feel again. :)
OH...and great news about the funding...I actually read that somewhere...maybe on his facebook wall about the extra funds. I really like what Hickenlooper has been doing for the most part...hope he gets re elected.
I had decided that I'd give them three days to call...and then I was finishing up some work and decided I would call after I finished the email and the call came through.
Good thing I tend to talk things out because as I was talking to him he was telling me that they were coming in to access what services she would need and how much she can do and can't do etc etc.
I said well...you know she has dementia right? He was like oh no I didn't know that. I asked if there were notes on the intake about what the Neurologist told me three weeks ago? He said no there isn't. I told him and he was like...OH...I just have that we are assessing what services she needs in the home, to help you out.
So I clarified to him about her condition and the issues at hand and that we don't need them to check to see if she's ready for a nursing home...we need him to do the intake to get her in a nursing home within a week. :)
Anyhow....he had to call another department that usually does that and see if he should go ahead with it...and called me back and said...yes he will be by on Monday and bring the paperwork and depending on how mom was would ask the questions or just get the signatures and call me when he got back to the office to finish filling out the paperwork.
Sigh...never leaving anything to chance with these guys...LOL. So the guy sounds really nice so I'm not worried about it...but glad I caught that or we would have been delayed again.
So I guess tomorrow I will be calling around to see who has openings...then I suppose I'll be going out to visit them...I'm tired just thinking about it.
In the mean time things are getting worse with mom...but still manageable. :)
Hope you are successful!
If I drop her off at Emergency she could end up an hour away...so that would limit my ability to monitor care and be there quickly if there was an emergency.
Saying that...it might end up that way anyhow! :)
Sigh...this sucks. :( lol sometimes that is just how it feels.
Well if I get a chance to go to the chiropractor tomorrow I can drop by the seniors center and see if they have a Blue Book...I've heard of them when I was researching a few months ago.
It will be about the only time I can get out without mom...she knows she can't come to Dr's appointments with me (she still puts up a fuss mind you) .
Can I scream now? Oh probably shouldn't it's like midnight...LOL...I might get some flack from the husband and kids. ;)